Thursday, April 5, 2018

March 13th-Moving to Elizabeth House

These posts obviously aren't in order but they all tell a part of our story and I felt they were each important to still write.

Thanks to Mom's adorable hallmate with tourettes and the sensitivity of stopping forcefeeding (a very important post on this will come soon) it was suggested that we move to Hospice's private home, Elizabeth House. While Mom was on a no more food/liquid by  mouth diet she still was receiving meds with applesauce and some shakes for other meds and they "no feeding" was a very gray and tricky area to try to discuss with staff. Moving her to the private home would be much easier to navigate with orders like this.

I headed up to Asheville on March 11th to spend time with Mom and see how her status was. I came back to Charlotte Tuesday b/c Max wanted to take me out for my birthday (Wednesday). Tuesday dad called asking about moving Mom. The idea of moving her from a place she had known for two years first made me panic. She had only ever left Aston Park for a seizure and head injury, and then for breaking her ankle/foot. And also once for a hair appointment that I brought her to (but ended up being a horrible idea). What I would give to take her out for ice cream now.

My only real concern would be if she would be okay with the move. Would she panic? Would it cause her to decline even faster? The hospice nurses assured us this would be okay and they would sedate her for the move. 

The last time I saw Mom in Aston Park she was wide eyed and alert. She didn't smile much on that Monday or talk but we prayed over her and did a modification of last rites (as people in this state can supposedly still hear us, but I wonder if she could understand us). This would be the last time she looked at me. 

Dad called Tuesday and sent pictures of Elizabeth House. Her move went smoothly and she was resting comfortably in her new room. It is a beautiful facility in Hendersonville near Flat Rock, a 30 minute drive from his house but such a more serene place for BB. 
We had a private room with adjoining bathroom. There is a common area between our room and the next that leads out to a patio with chairs. We didn't have a neighbor after our first two days there so had this whole area to ourselves. 
I cannot tell you what a blessing being at Elizabeth House was. I drove back Friday morning and brought Mom the birthday flowers a sweet friend had dropped off at my house. (Katie they got so many compliments!) Her room was huge, with a big window and bird feeders outside. I wish I had gone earlier. I wish I had climbed in bed and napped with her. 

Dad and I went out to lunch in Hendersonville at West First and then stopped in McFarlan's bakery (the best in NC) and I promptly broke into tears. I always went to Hendersonville with Mom to the Curb Market and then to McFarlan's. This was our thing. She couldn't stay away from the bear claws and I'm a sucker for the dinosaur cookies. We headed back to sit with Mom the rest of the day. Mom had strong vitals even though she was mostly unresponsive so they told Dad to get a good night's sleep at home.
Saturday we were back early in the morning and our best friends Tommy and Alice who sat with us the entire time. I held Mom's hand, told her I loved her and that it was okay to go. We went out to lunch and shared some laughs and praise God my brother hopped on a flight and arrived by 4pm. Tommy and Alice you will never know what your friendship has meant to us throughout this illness. And Beau, I know your March was a sh*tshow but you coming up Saturday made your little sister very very happy. 
Mom was re-positioned every 4 hours and given pain meds through a port in her leg. She was sleeping peacefully the entire six days at Elizabeth House. We monitored her vitals hoping for a sign. We had no idea how long this would last. Doctors and nurses met with us regularly trying to decipher her stats and where we were on this final approach. So many friends had told us that oxygen below x means y, or that pulse means this or that blood pressure means that. None of it really makes sense. Mom was a healthy young woman with the exception of this horrible f*cking disease. There was no telling how her body would slowly shut down.

Saturday her status wasn't good, and her breathing had started the "death rattle" what my friend Scott has nicely renamed the "travel rattle" so Dad spent the night. Usually they might be able to tell you when you have hours left but there is no perfect science to this. Beau and I drove home and came right back early in the morning.

Sunday was a long day. Her stats dropped all morning and we all felt we were close. Our dear friends the Elmores brought us lunch and the MVP Gaines Myer snuck in Zing Zang and vodka. I almost drove to Ingles for some cheap wine because Sunday was torture. Alcohol is prohibited at Elizabeth House but promise they could have copper bird feeders in the hundreds if they had a bar. Thank you to the friends that continually texted me through that. Even though the place was quiet and beautiful and attentive it was absolutely draining. The doctor came to talk to us around 3 and said Mom still had a strong pulse and that we could possibly even have hours to days left. Looking back now I should have been thrilled. But we were exhausted and emotionally spent. Dad decided to come home with me and Beau. Before we left I gave her a rosary I found in her dresser. I'm assuming it was hers or her mother's. She was raised Catholic and I thought maybe this was something she needed to pass through to the next world.

That was the last time I would see my mother alive.


  1. I'm glad for you that you're writing it all down while the memories are fresh. Wish I had done that. Holding you and your family in my heart and in my prayers. I remember so many emotions when my mom died from AD--everything from massive relief to equally great sadness not just for her death but for the many years she had been dying.

  2. Thank you for sharing all of this with us. I know it can't be easy to go through writing it all down but you do such a good job at putting it all out there. I've been thinking of you constantly over the past few weeks and hope as time goes by it gets easier for you but I know the fresh pain of grief is so tough to grapple with while you also trying to stay positive for the kids. Sending virtual hugs and bourbon!

  3. Can't even imagine how you and yours are feeling, but thank you for sharing. Thinking of you often.